How to Transform HIV Prevention
Table of Contents
- What Does "Transgender" Mean?
- What Do We Know About HIV and the Transgender Community?
- Why Are Transgender People at Higher Risk for HIV?
- How Do HIV Medications Interact With Hormone Therapy?
- Where to Go From Here?
From the onset of the epidemic, HIV has greatly affected the world's most vulnerable populations, and among those most affected are women and gay and bisexual men. There is little information available, however, about how HIV has affected transgender women and men, despite evidence suggesting that they may be at high risk. With rates of new infections on the rise among gay and bisexual men, public health officials are beginning to scratch their heads over what may be occurring among transgender people. We must understand how HIV prevention and treatment can be tailored to meet the needs of this highly misunderstood population.
Transgender men and women are generally defined as people whose gender identity, expression, or behavior differs from their biological sex. Contrary to popular belief, not all transgender people choose to undergo sex reassignment surgery. Many do take hormones, however, to change their appearance to match the gender with which they identify.
From the "hijra" in India to the "twospirit" of Native American tribes, transgender people have been recognized in many civilizations and in many different regions of the world. Sadly, their history has been riddled with misconceptions, intolerance, and perhaps most troubling, neglect. All of these factors have contributed to disparities that leave transgender people vulnerable to a host of health issues, including HIV. Despite building political momentum in recent years by working in solidarity with the larger gay, lesbian, and bisexual movement, transgender people are often still invisible or ignored in discussions ranging from education to health care.
The lack of a national monitoring system that gathers data on transgender people results in a great deal of missing information. The U.S. Census does not include an option for people to indicate a transgender identity. This is extremely problematic, as the Census largely determines the funding of government programs aimed at populations with the greatest need. In the Census's current form, transgender people do not exist. Thus public health officials are left to speculate on their exact number, their average annual income, and how many are raising children, among other things. This creates a huge challenge for transgender advocates to obtain the necessary funding for programs aimed at advancing their well-being, as there are little to no data to identify their needs and support strategies to meet them.
Recently, California has begun formally documenting health trends among its transgender residents. As of 2002, the state began recording "male-to-female" and "female-to-male" as gender reporting options in publicly funded HIV counseling sites. In 2003, the California Department of Health Services released data that revealed that transgender clients had much higher rates of HIV diagnoses (6.3%) than clients of other high-risk categories. This includes men who have sex with men (4.2%) and partners of people with HIV (4.8%).
The California data provided muchneeded insight into the relationship between HIV and the transgender population, proving that the issue needs greater attention. Still, while California is the most populous state in the U.S., it does not provide a complete picture of the HIV epidemic among transgender people across the U.S.
In 2007, the CDC conducted a metaanalysis of 29 studies focusing on transgender women and five studies focusing on transgender men, to estimate the prevalence of HIV. This meta-analysis reported findings similar to those in previous literature: transgender people are disproportionately affected by HIV. Specifically, it revealed that 28% of transgender women studied tested positive for HIV.
Even more alarming are the rates of HIV among transgender people of color. The 2003 California data showed that HIV diagnoses among African-American transgender clients, at 29%, were significantly higher than among all other racial groups. The CDC's meta-analysis echoed these data, reporting that among transgender African-American women, 56% tested positive for HIV. This was dramatically higher than the rate of HIV-positive white transgender women (17%) .
Studies highlighting rates of HIV among transgender men are even more rare, but what research does exist points to low rates of HIV among this population. Because there is no reliable estimate of the size of the transgender population, however, it may be that the actual rate of HIV infection among both transgender men and women may be even higher than reported.
Discrimination plays a big role in the challenges transgender people face, which in turn makes them highly vulnerable to HIV over the course of their lives. Many transgender people experience discrimination early in life, within their families. Violence, emotional abuse, and rejection from family members leave them without the emotional and financial support that often help young people establish stability in adulthood.
Various studies point to transphobia and homophobia as barriers to transgender people successfully obtaining education, employment, social services, and housing. Lack of family and institutional support pushes transgender people to the margins of the formal economy. This is particularly burdensome to transgender people of color, who face additional discrimination based on their race or ethnicity. As a consequence, they often are exposed to stressful environments, experience social isolation, and participate in behavior that places their health and safety at risk.
Limited employment options may force transgender people to turn to the street as a source of income. Many turn to "survival crimes" such as sex work, drug sales, and theft. The 2007 CDC study reported that 42% of transgender women participated in sex work. Of these women, 39% engaged in unprotected receptive anal intercourse. This rate was even higher among all transgender women in the study (44%). Further, 39% of transgender women in the study reported sex while drunk or high.
Since health care is strongly tied to employment in the U.S., many transgender people have difficulty obtaining hormone treatments through legitimate health care facilities, with the CDC reporting that half of transgender people lack health insurance. As a result, many turn to the street for hormones, with 34% reporting nonmedical sources for hormones. Additionally, 25% reported injecting silicone. The high rate of transgender people injecting hormones and silicone raises serious concerns about their exposure to HIV through the use of nonsterilized injection equipment.
Despite the high numbers of transgender people using hormone therapy, both through medical and nonmedical sources, little is known about the interactions and potential toxicities of hormones and HIV medications. There have been no major studies of the interaction between the two, and what is known about people with HIV taking hormone therapy and HIV medications at the same time has come from studies of menopausal women taking hormone replacement therapy to minimize the effects of menopause.
Studies show that some HIV drugs can decrease or increase the levels of hormones in the blood. Further, estrogen can cause reduced levels of some HIV drugs and put one at risk for viral rebound or drug resistance. Further research is necessary to observe any potentially harmful interactions among transgender people, as well as any side effects from long-term use of both hormone therapy and HIV medications.
Currently, there is no evidence-based HIV intervention tailored for transgender people. There is an urgent need to better understand the social and behavioral factors underlying their risk behaviors if we are to prevent more HIV infections in this population. Special efforts must be made to ensure that transgender people are involved in the design of HIV prevention efforts, to ensure a comprehensive and effective strategy.
HIV clinical trials should include transgender people in order to understand the effects of new medications on hormone therapies. These trials should also include transgender youth and seniors.
Lastly, public health agencies should advocate for education on transgender issues to minimize the physical and mental health disparities they face. This includes encouraging schools and families to foster positive identities among transgender youth.
Raquel Sapién is Chair of the National Advisory Board of the Center of Excellence for Transgender Health. Robert Valadéz is a Policy Analyst in the Public Policy Department of GMHC.